Jpouch - leakage at night only

So sorry to hear about the fecal incontinence, @janspons. I had a medication do that to me, also at night, and it was miserable.

Tagging a few members who are familiar with J-pouches and/or may have input on controlling the fecal incontinence at night @davem @lisag03 @busyyaya. I'd also like you to meet @tbrksweetyahoocom @mjohnson37 @marie2000 @jackiem95 @dnikulas @hopeful33250 who may have some thoughts for you.

How are you doing this week, janspons?

Hello @janspons,

I'm joining @lisalucier in welcoming you to Connect. I am sorry to hear of your problem with nighttime fecal incontinence. While I've never had Jpouch, I have had several surgeries of the upper digestive tract which has resulted in digestive tract problems. I also have diverticulitis and I'm familiar with one of the medications you listed, Flagyl. It sounds as if you have been taking this for a while. Is that correct? Do you notice the nighttime incontinence occurring during the 2-week period when you take the Flagyl?

Flagyl has always been a problem for me and has resulted in chronic diarrhea and loose stools. One time when I was in the doctor's office for diverticulitis, the doctor wanted to prescribe Flagyl. I told him about the problem I had with it and he listed Flagyl as medication allergy. Therefore, I don't use it anymore.

You might check with your doctor to see what else you could try besides the Flagyl just to see if that med might be the culprit. Sometimes we need to be our own advocate (and detective) to find an answer to our problems.

I look forward to hearing from you again as you deal with this problem. Will you continue to post about your progress in dealing with this?

I have a pouch after the removal of my congenitally malrotated colon. I don't know what kind. I have fecal incontinence. I can have it at any time. I also have had incomplete bowel movements. I have had them for years so I don't think it is connected to my pouch for me. I sort of think these 2 conditions might be related for me. When I have fecal incontinence it is hard to control. I am so grateful there is a place for me to talk about these things.

Thank you for your reply. I haven’t noticed much difference between the two. I was also prescribed a 2 week supply of suppositories, which I didn’t notice much change either. I am due to have a pouchoscopy this summer/fall. What my problem with this is my current insurance has a high deductible & not sure that Mayo is in my network. I am going on Medicare in July with a supplement that does include Mayo in network, so I am trying to hold out until then. I know people deal with this constantly, but I am still stumped why it started so randomly, and seems to only be an issue while asleep. I am continuing on my same regimen as of now & just continue to wear some type of incontinence pad/underwear at night.

Looking for others with a jpouch just for general discussion. Mine is 29 years old. I have had minor issues, on the same medications for years, but in the last 1-1/2 years, I have started stool leakage while sleeping. I take 3-4 loperamide, Metamucil & an antibiotic in the evening, and still have leakage which I'm not sure if it is due to gas or if something else is going on. I am due for a pouchoscopy in a couple months along with a couple other tests to check muscle strength in that area. I know for some this is a normal thing, but has been frustrating and I seemed to just come on suddenly. Thanks in advance for any comments.

I can’t have a J poach because I don’t have the muscles in my anus anymore. I would like a K pouch But it’s hard to find a doctor anywhere near my area who does them. Is a K pouch something that you could have yours changed to if the muscles are weakening?

I’m not sure about the Kpouch, I always worry that at some point I will lose my jpouch, it’s all I’ve known since 1996. They want me to have a couple tests besides my pouchoscopy to measure muscle strength & possible MRI.

I am currently waking up to leakage 2-6 times per night, sometimes a tablespoon or two, other times about a 1/4 - 1/3 cup amount. I am on Azathioprine, a cipro/flagyl rotation, I also take up to 8 loperamide/day, plus I take metamucil powder, gummies or capsules. I was also prescribed suppositories, which I didn't notice any change. I have no pain, no blood, just leakage. At this point I dread eating or going to sleep as I know I will have an accident. I have appointments in Rochester coming up on Aug 4 - for a pouchoscopy, Aug 5 - an anorectal manometry procedure, Aug 6 - Dr visit, and Aug 28 - an MR Proctogram Imaging Exam on the 28th of Aug. I am really hoping it will be something as easy as a med change or something, I have had such minor issues in the past 25+ years, I am just beside myself at this point. Thanks & sorry I don't get on this site as often as I should.

Hi, @janspons - the leakage you are describing would cause dread in me, too. When I had fecal leakage problems with extremely loose stools due to a medication I was taking, I would have trouble sleeping, due to dread and sheer terror. In my case, using those bed underpads gave me the confidence to go back to sleep.

How have your appointments gone so far to address this?

I have had a scope of my pouch, biopsies - don't have results yet, found a polyp but did not remove. Then I had an anorectal manometry procedure to test my sphincter muscles & met with GI the next day. I have a MRI proctogram exam on the 28th, and a PT consult the next day. My GI wants me to try Tremfya, the injection pen since the antibiotics, azathioprine, metamucil & loperamide are not doing much. I don't have pain other than an occasional cramping, no blood, but I cannot for the life of me get my stool to bulk up. Daytimes are usually good, but nights are the issue. I have been on the same med regimen for over 10 years and has worked fine up until about Nov 2023 is when the night leakage began, and was really kind of random. Something that I tink may contribute some is my spouse got a cpap in Nov 2023, and was a horrible snorer, so I would wake up multiple times/night, and if I did I would get up and go to the bathroom. Now I sleep pretty sound, maybe too sound, I don't wake up until it is too late. Anyone have experience with Tremfya? Would love to hear from you.